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874566 tn?1250733000

Advice with feedings please

Hi my daughter was born at 31 weeks weighing 1 pd 10 oz. She developed nec at 2 weeks of like. She had surgery and I was told they removed all of her large intestine leaving her a tiny piece of the end. They also removed 20 cm od the distal small bowel. They also removed her icv as well and the appendix. She was left with a iliostomy and a borviac line. They told me she has short bowel syndrome. She is tpn dependent right now and they are trying to give her some oral feeds just to stimulate her gut and make it grow. They told me she is dumping a lot and when they give her feeds she seems to take very long to digest it and pass it down.They also said she is a very special case because alhtough she seems to dump alot she is still growing. They have given her my breast milk and also tried neocate. Her stomach got distended at the last feedings and bile came out of her nose and ostomy so they stopped it.They told me that she seems to retaining her liquids right now and not peeing as much. The changed the sodium in the nutrition bag but nothing so far. As for her ostomy out put is a little lower. So I wanted to know why would she have so much ostomy out put? Also how long does it take for the intestines to grow? and do you recommend any certain types of feeding? like at a slower pace or formulas or something? anything any advice will help me a lot thank you
2 Responses
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527625 tn?1229489258
MEDICAL PROFESSIONAL
Necrotizing enterocolitis (NEC) with resulting short bowel syndrome is a difficult disease to treat.  From what you describe, it looks like your daughter's medical team is doing all the right things.  Difficulty with movement and absorption of feeds can come and go, and there is no "standard" approach to treatment that will work always work.  The treatment and feeding regimen for each patient must be individualized as it is being done for your daughter.
Helpful - 1
874566 tn?1250733000
Thank you. Do you know of any other type of formulas that might help her? I mean help her with her short bowel or special formulas for that? Have you also heard of omegaven the other type of lipids being used in Boston? the omega 3's? if so what do you think of that?
Helpful - 0

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